In the aftermath of the tragic Bondi knife attack, Joel Cauchi’s parents have spoken about their son’s long history of mental illness, having been diagnosed with schizophrenia at age 17. They said they were “devastated and horrified” by their son’s actions. “To you he’s a monster,” said his father. “But to me he was a very sick boy.”

Globally, one out of every eight people report a mental illness. In Australia, one in five people experience a mental illness in their lifetime.

Mental illness and distress affects not only the person living with the condition, but family members and communities. As the prevalence of mental health problems grows, the flow-on effect to family members, including caregivers, and the impact on families as a unit, is also rising.

While every family is different, the words of the Cauchis draw attention to how families can experience distress, stress, fear, powerlessness, and still love, despite the challenges and trauma. How can they help a loved one? And who can they turn to for support?

The role of caregivers

Informal caregivers help others within the context of an existing relationship, such as a family member. The care they provide goes beyond the usual expectations or demands of such relationships.

Around 2.7 million Australians provide informal care. For almost a third of these the person’s primary medical diagnosis is psychological or psychiatric.

It has long been acknowledged that those supporting a family member with ongoing mental illness need support themselves.

In the 1980s, interest grew in caregiving dynamics within families of people grappling with mental health issues. Subsequent research recognised chronic health conditions not only affect the quality of life and wellbeing of the people experiencing them, but also impose burdens that reverberate within relationships, caregiving roles, and family dynamics over time.

Past studies have shown families of those diagnosed with chronic mental illness are increasingly forced to manage their own depression, experience elevated levels of emotional stress, negative states of mind and decreased overall mental health.

Conditions such as depression, anxiety disorders, bipolar disorder, and schizophrenia can severely impact daily functioning, relationships, and overall quality of life. Living with mental illness is often accompanied by a myriad of challenges. From stigma and discrimination to difficulty accessing adequate health care and support services. Patients and their families navigate a complex and often isolating journey.

The family is a system

The concept of family health acknowledges the physical and psychological wellbeing of a person is significantly affected by the family.

Amid these challenges, family support emerges as a beacon of hope. Research consistently demonstrates strong familial relationships and support systems play a pivotal role in mitigating the adverse effects of mental illness. Families provide emotional support, practical assistance, and a sense of belonging that are vital for people struggling with mental illness.

My recent research highlights the profound impact of mental illness on family dynamics, emphasising the resilience and endurance shown by participants. Families struggling with mental illness often experience heightened emotional fluctuations, with extreme highs and lows. The enduring nature of family caregiving entails both stress and adaptation over an extended period. Stress associated with caregiving and the demands on personal resources and coping mechanisms builds and builds.

Yet families I’ve interviewed find ways to live “a good life”. They prepare for the peaks and troughs, and show endurance and persistence. They make space for mental illness in their daily lives, describing how it spurs adaptation, acceptance and inner strength within the family unit.

When treating a person with mental illness, health practitioners need to consider the entire family’s needs and engage with family members. By fostering open and early dialogue and providing comprehensive support, health-care professionals can empower families to navigate the complexities of mental illness while fostering resilience and hope for the future. Family members express stories of an inner struggle, isolation and exhaustion.

Shifting the focus

There is a pressing need for a shift in research priorities, from illness-centered perspectives to a strengths-based focus when considering families “managing” mental illness.

There is transformative potential in harnessing strengths to respond to challenges posed by mental illnesses, while also supporting family members.

For people facing mental health challenges, having loved ones who listen without judgement and offer empathy can alleviate feelings of despair. Beyond emotional support, families often serve as crucial caregivers, assisting with daily tasks, medication management and navigating the health-care system.

As the Cauchi family so painfully articulated, providing support for a family member with mental illness is intensely challenging. Research shows caregiver burnout, financial strain and strained relationships are common.

Health-care professionals should prioritise support for family members at an early stage. In Australia, there are various support options available for families living with mental illness. Carer Gateway provides information, support and access to services. Headspace offers mental health services and supports to young people and their families.

Beyond these national services, GPs, nurses, nurse practitioners and local community health centres are key to early conversations. Mental health clinics and hospitals often target family involvement in treatment plans.

While Australia has made strides in recognising the importance of family support, challenges persist. Access to services can vary based on geographic location and demand, leaving some families under-served or facing long wait times. And the level of funding and resources allocated to family-oriented mental health support often does not align with the demand or complexity of need.

In the realm of mental illness, family support serves as a lifeline for people navigating the complexities of their conditions.

If this article has raised issues for you, or if you’re concerned about someone you know, call Lifeline on 13 11 14.

Amanda Cole, Lead, Mental Health, Edith Cowan University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Swedish climate activist Greta Thunberg describes herself as having Asperger’s while others on the autism spectrum, such as Australian comedian Hannah Gatsby, describe themselves as “autistic”. But what’s the difference?

Today, the previous diagnoses of “Asperger’s disorder” and “autistic disorder” both fall within the diagnosis of autism spectrum disorder, or ASD.

Autism describes a “neurotype” – a person’s thinking and information-processing style. Autism is one of the forms of diversity in human thinking, which comes with strengths and challenges.

When these challenges become overwhelming and impact how a person learns, plays, works or socialises, a diagnosis of autism spectrum disorder is made.

Where do the definitions come from?

The Diagnostic and Statistical Manual of Mental Disorders (DSM) outlines the criteria clinicians use to diagnose mental illnesses and behavioural disorders.

Between 1994 and 2013, autistic disorder and Asperger’s disorder were the two primary diagnoses related to autism in the fourth edition of the manual, the DSM-4.

In 2013, the DSM-5 collapsed both diagnoses into one autism spectrum disorder.

How did we used to think about autism?

The two thinkers behind the DSM-4 diagnostic categories were Baltimore psychiatrist Leo Kanner and Viennese paediatrician Hans Asperger. They described the challenges faced by people who were later diagnosed with autistic disorder and Asperger’s disorder.

Kanner and Asperger observed patterns of behaviour that differed to typical thinkers in the domains of communication, social interaction and flexibility of behaviour and thinking. The variance was associated with challenges in adaptation and distress.

Between the 1940s and 1994, the majority of those diagnosed with autism also had an intellectual disability. Clinicians became focused on the accompanying intellectual disability as a necessary part of autism.

The introduction of Asperger’s disorder shifted this focus and acknowledged the diversity in autism. In the DSM-4 it superficially looked like autistic disorder and Asperger’s disorder were different things, with the Asperger’s criteria stating there could be no intellectual disability or delay in the development of speech.

Today, as a legacy of the recognition of the autism itself, the majority of people diagnosed with autism spectrum disorder – the new term from the DSM-5 – don’t a have an accompanying intellectual disability.

What changed with ‘autism spectrum disorder’?

The move to autism spectrum disorder brought the previously diagnosed autistic disorder and Asperger’s disorder under the one new diagnostic umbrella term.

It made clear that other diagnostic groups – such as intellectual disability – can co-exist with autism, but are separate things.

The other major change was acknowledging communication and social skills are intimately linked and not separable. Rather than separating “impaired communication” and “impaired social skills”, the diagnostic criteria changed to “impaired social communication”.

The introduction of the spectrum in the diagnostic term further clarified that people have varied capabilities in the flexibility of their thinking, behaviour and social communication – and this can change in response to the context the person is in.

Why do some people prefer the old terminology?

Some people feel the clinical label of Asperger’s allowed a much more refined understanding of autism. This included recognising the achievements and great societal contributions of people with known or presumed autism.

The contraction “Aspie” played an enormous part in the shift to positive identity formation. In the time up to the release of the DSM-5, Tony Attwood and Carol Gray, two well known thinkers in the area of autism, highlighted the strengths associated with “being Aspie” as something to be proud of. But they also raised awareness of the challenges.

What about identity-based language?

A more recent shift in language has been the reclamation of what was once viewed as a slur – “autistic”. This was a shift from person-first language to identity-based language, from “person with autism spectrum disorder” to “autistic”.

The neurodiversity rights movement describes its aim to push back against a breach of human rights resulting from the wish to cure, or fundamentally change, people with autism.

The movement uses a “social model of disability”. This views disability as arising from societies’ response to individuals and the failure to adjust to enable full participation. The inherent challenges in autism are seen as only a problem if not accommodated through reasonable adjustments.

However the social model contrasts itself against a very outdated medical or clinical model.

Current clinical thinking and practice focuses on targeted supports to reduce distress, promote thriving and enable optimum individual participation in school, work, community and social activities. It doesn’t aim to cure or fundamentally change people with autism.

A diagnosis of autism spectrum disorder signals there are challenges beyond what will be solved by adjustments alone; individual supports are also needed. So it’s important to combine the best of the social model and contemporary clinical model.

Andrew Cashin, Professor of Nursing, School of Health and Human Sciences, Southern Cross University

This article is republished from The Conversation under a Creative Commons license. Read the original article.